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Rituximab infusion

Hi all, I got a letter yesterday telling me to attend hospital for the first of 2 infusions of Rituximab next Saturday i have read the leaflet but just wondered if any fellow sufferers had anything to offer as am still not totally sure what to expect.

Kindest Regards

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Hi phil , it will be a long day so take a good book or down load a movie on ipad and remember head phones. I also take a snack but we also get soup and sandwichs and cups of tea . You may feel cold so a jumper might be necessary. I get a slow rate of infusion as i find it easier to tolerate. Finally be prepared that you may possibly feel unwell for up to a week so rest up . Good luck with it 😀

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Thanks weathervane, Yes i will make sure i have enough to keep myself occupied for the duration and hopefully not to much feeling unwell so will see, Love the name by the way

Cheers

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I had terrible gastritis and spent most of the week in bed , now they slow the rate and i have been grand , just a bit tired . Good luck x

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Thanks i will bear that in mind.

Cheers

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If you feel like a nap while being infused, then take it.

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That sounds like a plan,Cheers

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A friend did Rituximab worked miracles for her. 🤞🤞Good luck

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Thanks hope it does the same for me

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Thats really good the hear thanks for that you made my day

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I received this treatment in July 2016, OMG it was the best thing that ever happened to me!!!!!! I was back to myself and I would do it again in a heart beat.

The day before I was due in for the infusion, I went to the hospital for blood tests, BP etc. The next day I was at the hospital for 8am, my mum could not stay with me or enter the ward due to infection they said; I had my ipad, my knitting and a book to keep me occupied and slippers. I wore joggers and a short sleeve top so that it would make access to my arms easy. It was long waiting around, then your hooked up to the line. The infusion is adminstered slowly, every half hour they came checked I was okay and then increased the dose for the next half hour. I was okay until I began without warning my throat felt dry, then I could not stop coughing, I thought it was sitting in a sterile environment, it wasn't until I felt my face itching and the patient in the next bed said what's up with your face, that a nurse was called, turns out I was having some sort of allergic reaction to the infusion. Actually it was dealt with very quickly and I was rested for a bit, once everything had calmed down, they continued the infusion at a much slower rate.

The second round was easier because they knew they had to adminster it a little slower than normal. It took the whole day 8am -7pm but i was fine. Yes, I felt shattered for like two days after but once that passed, i had my life back, blissfully happy and you wouldn't believe I had been suffering from R.A hell since 2011. However, the issue was with MXT, my body could not handle the dosage once over 10mg, at 20mg I could not walk upright as I was doubled over all the time with stomach pain and nausea. Despite being taken off pills and turned onto injection, none of the changes made a difference. The end result was off to gastro to find internal bleeding due to acid burning my oesophagus, stomach lining ulcer and a small hernia. I had been complaining for years about MXT as the s.e was hell. Unfortunately because I really could not tolerate the MXT it meant I could not continue with this treatment, gutted as the infusion was a God send.

I truly hope it all goes well for you and gives you a new lease of life. The infusion was a breeze and the nursing staff were fantastic, I can only pray your experience will be just positive, if you don't mind, please let us know how it goes. Best wishes

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Thanks, That sounds herendous but it does seem like there is light at the end of the tunnel i am feeling a little anxious but if it means improving my quality of life then it has to be worth it so yes i will let you know how it goes,

You see this is why i asked the question this morning because you dont read this kind of info from the leaflets and it just reafirmes my point that fellow suferers are the best people to learn from.

Many thanks

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Why couldn't you continue with Rituximab without MXT? I can't tolerate MXT but I'm still allowed Rituximab. I agree it's the best drug I've had so far!

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My rheumatologist would not allow it which is why we are at crossroads because it really worked, but he's insisting the two go hand in hand, can't have one without the other, smh

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Maybe worth calling the NRAS helpline to discuss this as they should know your rights and the best way to sort the situation.

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That’s a shame they wouldn’t let you take your Mum with you...it’s a very long day without someone to chat to!!

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Agreed, but I had lots to occupy my time

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I drove myself to & from my first infusion in 2016 . I had a bit of a hiccup ..came out in a rash, but it calmed down & I was fine to drive the 40 minutes home.

I had no nasty after effects & went back quite happily for the second infusion.

It took about 10/12 weeks to work 100%, & I am very happy on it now.

For some reason the infusion makes you feel cold, so even in this weather take a throw or a Pashmina to cuddle under. It also makes you sleepy, so although you will be there for about 7 hrs, time passes quickly as you sleep a lot.

Hope all goes well in Saturday.

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thanks AC - you're a comfort!! XOX get my 1st Mnoday

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Thanks AgedCrone thats really helpful

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I started the infusions 1 1/2 years ago, so I have had 6 infusions altogether. I go to the infusion center every six months, the first infusion takes about 4-5 hours, it is a long day, I always bring a book or reader although I generally sleep through the entire thing. I am given benadryl first to decrease the chances of an allergic reaction which helps me sleep peacefully. I have not found it painful at all and have had no adverse reactions. The nursing staff is wonderful, they check up on you frequently, taking vitals to make sure things are going well. I typically choose a cubby that has a recliner and a bed in it, and my husband just naps in the bed while I nap in the recliner ( we live a couple of hours away from the infusion center). I was warned that I may not feel well and would possibly be very tired and groggy after the infusion was complete, but I have found just the opposite, in fact, I typically feel great and do the driving on the way home. Then 2 weeks later, we repeat the process. I have had no adverse side effects, the Rituxan simply keeps my RA in remission, I take an anti-inflammatory daily, but nothing else and I feel great. I have had RA for 45 years and previously have taken methotrexate, penicillimine, Enbrel, Humira, Luflutimide and I develop allergies to all of them. This has been wonderful and is so liberating because of the schedule. I wish you the same experience that I have had. Good luck.

Oh, and absolutely bring something warm, the infusion makes you cold. I wear long sleeves and yoga pants to keep warm and still request a warmed blanket.

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That sounds really great, I have been on most of what you mention and again with similar affects so hopefully this will be what i have been looking for the MTX is probably the only thing that has not affected me as much as the others its just left me heavily bruised particularly my arms but it does help with the RA but if this puts me back in remission then it has to be worth it.

Thanks TripperUS

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Hi Phil,

These comments certainly are helpful, aren't they. Keep in mind that your reaction could be totally different. I've had RA over 20 years and Rituxan has been the best since my Enbrel quit working. Keep in mind, to begin the infusion, you will receive a Benadryl (orally), and Solumedrol (thru IV) -- both to combat any allergic reaction. Then you'll wait a half hour, and the Rituxan drip will begin. You will be monitored carefully. My biggest question was "When will I begin to feel better" as I had been in bad shape. Amazingly for me, I began feeling better immediately (although a little tired for a day or two - that's it!). They say it's the Solumedrol that helps you feel better, but I seemed to coast right into feeling better every single day. The only thing I say to be careful of is infection. Your immune system will be depleted, so wash your hands constantly, and stay away from anyone with a cold, flu, etc. I've had 3 rounds of infusions over the past year and a half, and after one I caught a horrible cold which had me down for 4-5 days. My rheumatologist prescribed antibiotic, and I was better, but I am so careful now. People who don't have RA have no clue, do they? But, at least we know we can have a good life with these miracle drugs. Keep us posted. You will be just fine.

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Interesting, I am in the US, and here rather than doing the Benadryl orally, they do it with infusion. If I take oral Benadryl I am unable to sleep, get agitated easily and am almost hyperactive, with the Benadryl infusion, I simply slide into a great nap. The nurses explained that I was probably sensitive to whatever else was in the pill itself.

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Thanks, I do try to avoid infection as much as possible but i did notice a while ago i had a cold and took weeks to shift so you are spot on and yes all the posts are incredibly helpul so huge respect to everyone who posted back.I will let everyone know how it goes.

Thanks again everyone

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Hi phil I always wear lose clothes but have a card in case get cold take a book or Crosswords I have my infusion slower as at normal I get very hot and stats rise on slow am OK. The nurses on the infusion unit are brilliant if your not sure say if u feel queasy or dizzy or anything just ask them. They will take good care of you.

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Thanks that’s good to know cheers

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good luck - i go on Monday to belfast for my 1st of 2 so am touching wood here too.

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Thanks, the very best of luck hope all goes well and please let me know how it goes

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8 days later and ok, just a bit dozy and lightheaded. Can't remember if i did reply to you tho!. Apart from feeling a bit too tired to start swimming again am doing quite well, or at least no worse! No probs on the day tho' will try to take my kind of food when back there Weds 8th. I know it can take up to abt 16 wks to show real improvement but still don't think i was that bad. Maybe 1940s war babies are bred to be stoics? Hope your 1st infusion went well too? Best 2u

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Hi GranAmie, sounds just like me light headed, minor headache and very tired, the only thing i had was during the first 30mins i noticed my cheek bones felt like they were pulsating and my throat went very dry and felt like a stabbing sensation this made me feel quite uncomfortable, the doctor asked if i wanted to stop but i explained to him id rather see it through which he agreed with and said they would monitor closely, After that it went really well, Just feeling a slightly nigley headache while posting this but tolerable at the moment.

Hope the 8th goes ok for you i am back on the 11th for the 2nd one.

Best wishes.

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